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Q&A: Girl’s brain death ignites difficult debate

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From page A1 | January 01, 2014 | 4 Comments

OAKLAND — A California hospital and family are embroiled in a harrowing legal and medical fight that has reignited the debate about when machines keeping a severely brain-damaged person alive should be turned off.

Doctors, outside specialists and a judge have all agreed that 13-year-old Jahi McMath is brain dead. They consider that the same as being legally dead and want to remove the girl from the breathing machine that has kept her heart beating since Dec. 9.

Jahi’s family has rejected the diagnosis and is fighting to keep her on the ventilator while they try to find doctors and a long-term facility willing to care for her.

Q: What happened to Jahi?

A: She underwent a tonsillectomy and tissue removal at Children’s Hospital Oakland to treat sleep apnea. After she awoke from the operation, she started bleeding heavily from the nose and mouth and went into cardiac arrest, her family said. Doctors declared her brain dead three days later. The hospital is investigating the cause of the complications.

Q: Why does her family want to keep her on a ventilator?

A: Jahi’s relatives are Christians who say their religious beliefs hold that as long as her heart is beating, the girl is still alive. They have asked a judge to keep her on the ventilator and provide breathing and feeding tubes that would allow her to be transferred to another facility.

Dr. Paul Byrne, a pediatrician who has questioned the definition of brain death, says in court documents that he visited Jahi’s bedside and observed her responding to her grandmother’s voice and touch with a squirming movement.

“In my opinion this signifies she is not dead,” Byrne said. “She should receive treatment as she is alive just like everyone else with severe head injury. … If she gets treatment, she will have a chance to recover brainfunction.”

Byrne, who spent more than a decade as the director of neonatology at St. Charles Mercy Hospital in Ohio, said he has not conducted a full physical of Jahi because he is not licensed in California.

Q: Why does the hospital want to take her off the ventilator? Even if doctors say she will never recover, why won’t they give in to the family’s wishes?

A: Two doctors at Children’s Hospital and an independent pediatric neurologist from Stanford University have concluded that because there is no neurological activity in Jahi’s brain or brain stem, she is dead. The hospital said it cannot continue treating a dead person and is under no legal or ethical obligation to keep her heart beating artificially.

Hospital officials said that parents do not have a constitutional right to determine when to remove ventilation from a brain-dead patient and that a California law provides only for a reasonably brief period for a family to gather at a patient’s bedside before ventilation can be removed.

“Sadly and tragically, Jahi McMath has already died,” said Dr. David Magnus, a pediatrics professor and Chair of the Stanford Center for Biomedical Ethics.

Q: Is this case different from other high-profile cases in which families have gone to court over prolonging medical intervention?

A: The person whose name has become most associated with end-of-life legal fights in the U.S. is Terry Schiavo, a Florida woman who collapsed at her home when she was 26 years old. After her heart stopped and she suffered brain damage, Schiavo entered what doctors refer to as a “persistent vegetative state,” or prolonged coma. Unlike Jahi, whose heart doctors say would stop beating if she were removed from the machines helping her breath because her brain stem is not functioning, Schiavo maintained signs of limitedbrain activity and was able to breathe without a ventilator. She died in 2005 after her husband won a protracted court fight with Schiavo’s parents to have her feeding tube removed.

Also in the news is the case of Michael Schumacher, a Formula One champion who is in a medically induced coma after hitting his head on a rock while skiing in the French Alps. Doctors have said a brain scan showed small, “surprising” signs of improvement, but doctors have given no insight into his prognosis.

Q: Is there any scientific basis for the family’s belief that the girl is responding to the family, is aware of her surroundings, or could recover?

A: No, according to Nancy Berlinger, a bioethicist with The Hastings Center, a nonpartisan research institute devoted to health and medical issues.

“One of the things very confusing about cases like this is that the patient looks alive, the heart is beating, the body has a normal color … the body feels warm,” Berlinger said. “What is going on now is the maintenance of function by mechanical means.”

Children’s Hospital spokesman Sam Singer said Jahi’s family also could be mistaking the movements they say she has made to an involuntary muscle reflex sometimes seen in brain-dead patients that doctors call the “Lazarus effect.”

Q: What does the family want to happen to Jahi, and what are the obstacles?

A: The family wants to move Jahi to an alternative health care facility where she can be kept indefinitely on a ventilator. They say they are in discussions with New Beginnings Community Center in Medford, N.Y., and with an unnamed facility in Arizona.

New Beginnings, an outpatient clinic that provides physical therapy and counseling for people with traumatic brain injuries, has agreed to accept Jahi as a patient and to provide 24-hour nursing and respiration therapy care.

Children’s Hospital has said it would facilitate the transfer by allowing an outside doctor to fit Jahi with breathing and feeding tubes, but only under certain conditions. The hospital says it needs to speak directly with a new facility to make sure officials there understand Jahi’s status, to confirm there is a lawful medical transportation plan for moving the girl and to verify the coroner has approved the move.

Q: What happens next?

A: A California judge has given the family until Jan. 7 to work out an agreement with the hospital or to secure a federal court injunction or an extension from a state appeals court. If none of that happens by that date, the hospital would have authority to remove the ventilator.

The Associated Press

The Associated Press

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Discussion | 4 comments

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  • Tax PayerJanuary 01, 2014 - 8:00 am

    This is a very disheartening situation. Medical personnel say that you are dead if on ventilator to keep you breathing. That is fairly common in that if they take you off the ventilator you will not be able to breath. So now we have parents who want to keep her on the ventilator. I truly don't understand their decision but then again I am not her parents. I for one will sign a do not resuscitate or continue my life unless I can do it on my own. Again there decision. I also know that a very large lawsuit is awaiting the end of this story.

    Reply | Report abusive comment
  • Leeches that feed on the systemJanuary 01, 2014 - 7:30 pm

    The real question is ..... Who is paying for this ? If we as taxpayers are like I suspect then pull the plug . If her parents are through their own medical from employment , then this should be a issue that is not publicized .

    Reply | Report abusive comment
  • Tax PayerJanuary 02, 2014 - 5:44 am

    I would bet a years pay that the parents don't have the means or medical coverage for their daughter. It will be paid on the tax payer's dime. Each day tens of thousands of dollars for a child that the medical person deem to be deceased. I feel sorry for the parents and the medical personnel going through this as now we have a judge stating to keep her on life support.

    Reply | Report abusive comment
  • Joyce HarrisJanuary 26, 2014 - 7:25 am

    As a parent I would probably do the same fight to the end for my daughter.Cause of the reason she went to the hospital at first a simple surgery.I would say it is something the doctors did wrong and is trying to cover it up without a fight.My prayers are with the family.

    Reply | Report abusive comment
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